Jenniferlove
Cathlete
I'll pray for you. I can't imagine how hard this must be; keep the Faith.
Please pray for my baby girl
- Thread starter wonderwoman
- Start date
wonderwoman
Cathlete
Hi everybody,
I just want to say thank you all for your wonderful words of hope and all of your hugs and prayers because it seems to be working. My baby Sam hasn't had a spasm in almost 2 days. The doctor says she is doing really well with the medicine. She has been on it for 6 days now and it seems to be working. I think we will be going home tomorrow. We were suppose to be coming home today but the blood pressure machine was not ready for us yet. Hopefully it will be tomorrow if not they will be sending a visiting nurse to my home until the machine arrives. We also have to moniter her sugar level daily. My husband my saint will be the one to inject her with the medicine because it was so hard for me to do it.
We have about 4 more weeks to go until she is done with the ACTH. In the mean time we have to moniter her very closely b/c of the side effects. I cant take her out into the public b/c her immune system will weaken while on this med and if she catches even a cold it could be really disaterous for her. She will have many visits with her nuerologist within the next couple of weeks and her next EEG will be Mar 16 and then the doctor could really see how well the med is really working. Hopefully by that time her brain wave patterns will be more stablized.
There is still a chance that she could relapse but I hope and pray it doen't happen.
My baby girl has been such a little trooper through out this whole ordeal between being poked for blood, urine, sugar, EEg's, MRI, being sedated you name they did it she barely even cried. I cried more than she did. I wish it was me who was going through all of it and not her. I thank god that she will have no memory of all this. I will and that is the least I can do.
Inspite of all this chaos my family has become more closer my husband and I more intimate than ever before. Never take life for granted because you just never know what could happen. Your world can change ina minute.
Sorry for rambling Lilly
I just want to say thank you all for your wonderful words of hope and all of your hugs and prayers because it seems to be working. My baby Sam hasn't had a spasm in almost 2 days. The doctor says she is doing really well with the medicine. She has been on it for 6 days now and it seems to be working. I think we will be going home tomorrow. We were suppose to be coming home today but the blood pressure machine was not ready for us yet. Hopefully it will be tomorrow if not they will be sending a visiting nurse to my home until the machine arrives. We also have to moniter her sugar level daily. My husband my saint will be the one to inject her with the medicine because it was so hard for me to do it.
We have about 4 more weeks to go until she is done with the ACTH. In the mean time we have to moniter her very closely b/c of the side effects. I cant take her out into the public b/c her immune system will weaken while on this med and if she catches even a cold it could be really disaterous for her. She will have many visits with her nuerologist within the next couple of weeks and her next EEG will be Mar 16 and then the doctor could really see how well the med is really working. Hopefully by that time her brain wave patterns will be more stablized.
There is still a chance that she could relapse but I hope and pray it doen't happen.
My baby girl has been such a little trooper through out this whole ordeal between being poked for blood, urine, sugar, EEg's, MRI, being sedated you name they did it she barely even cried. I cried more than she did. I wish it was me who was going through all of it and not her. I thank god that she will have no memory of all this. I will and that is the least I can do.
Inspite of all this chaos my family has become more closer my husband and I more intimate than ever before. Never take life for granted because you just never know what could happen. Your world can change ina minute.
Sorry for rambling Lilly
LadyPakenham
Cathlete
Lilly, you aren't rambling. This is important and wonderful news! Let's hope this is the end of the worst of it. Remember that joy and laughter strengthens the immune system. 
wonderwoman
Cathlete
After spending 17 days in the hospital my baby girl came home today. Happy to say she hasn't had a spasm in a week and a half. The medicine has been a miracle. It was like bringing her home for the first time. She is such a different baby smiling laughing and rolling over. We feel so lucky and blessed! Thank all of you wonderful woman for your sincere thoughts and prayers.
Lilly
Lilly
Cathe Friedrich
Administrator
So happy to hear your wonderful news and so glad everybody is home in a much happier place now. Many hugs and continued prayers to Sam and of course all of you!
RapidBreath
Cathlete
wonderwoman
Cathlete
Thanks again and thank you cathe for responding to my thread it means so much!
wonderwoman
Cathlete
Thank you all again!
